My little brother George is living with a rare genetic disorder called GNB1, as of currently there are only 64 people in the world diagnosed with this. Because of it’s rarity, most people, including healthcare professionals are unaware of this so I am working on raising awareness and April is GNB1 awareness month. This condition affects neurological development and leads to a range of challenges, including developmental delays, communication differences and complex medical needs.

 

George is an extremely happy, loving, cheeky and outgoing person, with the biggest personality who is so determined and has so much strength. George is non-verbal and has many challenges that are believed to fall under GNB1. We were told George would never walk, however against all odds he began walking around our home (When he feels like it!).

 

George is unable to complete any tasks independently and relies on us for full support. George has a DBS (Deep Brain Stimulation) system in place which is to try and help with involuntary dystonic movements which developed as he hit his teen years, as well as a PEG which we manage at home. He relies heavily on routine due to not being able to voice his needs as well as for comfort, and has a mental age of a toddler, so enjoys watching cartoons, sensory play, and music.

 

I am George's sister first, and a caregiver for him second but I do understand the challenges and complications of living with someone with 24/7 care needs and I love being able to support in giving him the best life he deserves. I am heavily included in his life and he is an extremely important person to me, so I am happy to speak with anyone to give more information and answer any questions regarding his condition. He is loved by everyone that meets him and I always think about the person he may have been without GNB1, however he has an amazing network of people that support him daily and as much as we would love to take GNB1 away from him if it was an option, his happiness in daily life assures us that the choices we make for him will always have his best interest at heart and he is never seen without a smile.

Caring and living with George can be difficult but it has given me an amazing perspective on patience, resilience and the importance of small milestones others may take for granted.

George is now 20 and was diagnosed at 14, which is why I will be walking 14k to raise money to go to the GNB1 charity so they can keep researching. George & friends will join me for the final 5k. Any support is hugely appreciated & any donations made will be going to GNB1 advocacy group ☺️

Wherever I go in life and whatever I do, I know I will have George beside me. It is extremely rewarding and there is no greater title than his sister.